Celiac disease is a common, but serious autoimmune condition that can occur at any stage of life, with patients experiencing the gamut of symptoms – from severe malnutrition to painful abdominal cramping to no symptoms at all.
At the root of the problem is gluten, a protein found in wheat, rye, barley as well as cross-hybrids of those grains, that for celiac sufferers, causes their immune system to overreact. This results in inflammation and the immune system mistakenly attacks parts of the small intestine responsible for the absorption of nutrients – villi.
Left unaddressed, the disease can result in malnutrition, among other complications. In the United States, where gluten is found in three staple grains (wheat, barley and rye) that often contaminate food production, celiac disease can be particularly trying for patients.
The takeaway:
Celiac disease is an autoimmune disease that can present itself with over 200 symptoms (or none at all), and diagnosis can be tricky. The only current treatment is a gluten-free diet, which can be more expensive than a traditional diet and is a burden on patients and families.
“The only treatment for celiac disease is a strict and lifelong gluten-free diet,” said Monique Germone, PhD,, associate professor of psychiatry and pediatrics at the CU Anschutz School of Medicine and a pediatric psychologist at Children’s Hospital Colorado who studies and cares for celiac disease patients. “Once someone goes on a gluten-free diet, “nearly all of the health concerns from having celiac disease really either drastically improve or go away completely. That said, health monitoring over time is still needed to ensure a healthy balanced diet and to monitor for complications that can still develop over time.”
A common misperception that circulates, especially online, is that celiac disease is similar to food allergies, Germone said.
“Celiac disease is different from having food allergies,” she said. “Celiac disease is an autoimmune condition that has a different disease and treatment profile in both the short and long term.”
“Allergies can be treated in certain cases, and we’re gaining more understanding of the benefits of exposure therapy for allergies, especially for some children at young ages, but celiac is an autoimmune condition” she said. “It’s dangerous to compare celiac disease to allergies on that front, but in an emergency situation food allergies can be immediately life threatening, while celiac disease is a long-term challenge.”
Deeper dive: Allergy treatment vs celiac disease
Sadie Nagle, MS, RD: Technically, food allergies can't be "treated" because exposure therapy or food challenges aren't a one-size fits all; not every type of food allergy qualifies for these options and it is patient-dependent based on prior testing for the food allergy. In medical emergencies and when necessary, food allergy reactions are treated with antihistamines and Epipinephrine (for anaphylaxis). While both conditions are serious, food allergies can be immediately life threatening; celiac disease is not immediately life threatening.
Marisa Stahl, MD: "For celiac disease, the only treatment is elimination of gluten exposure and there are no rescue therapies for children that have been exposed. Acute exposures do not cause anaphylaxis, but can cause severe gastrointestinal, neurologic, and other symptoms."
Below, Germone gives an overview of celiac disease, including a tricky diagnosis period, how much exposure triggers a reaction and the financial challenges of a gluten-free diet.
“One of the trickiest things about celiac disease is that you can have no symptoms or a variety from a list of over 200 symptoms.”
While around 1%-3% of Americans have celiac disease, studies point to higher prevalence rates. Over 200 potential symptoms complicate diagnosis, with many not even directly gut-related, such as skin disorders, joint pains, poor growth, irritability and headaches. Patients can also show no symptoms. An estimated 80% of people have the condition, which can develop at any age, and don’t know it.
CU Anschutz estimates, conducted in partnership with Marian Rewers, MD, PhD, at the Barbara Davis Center, found that celiac disease rates in Colorado fell at the high end, at 2.4%. Breaking that number down further, it estimates to 10 students per average elementary school in Colorado.
There are two main genes that predispose people to celiac disease: DQ2 and DQ8. “Without those genes, the likelihood of developing the disease is slim,” Germone said. Researchers are looking for an external trigger that turns on those genes, resulting in celiac disease. “That's why if there's a family history of celiac disease, clinically, that's the recommendation to get tested. The problem is over 40% of the U.S. population has the genes for celiac disease, so a negative test can be helpful.”
“Diagnosis steps for celiac disease: continuing to eat gluten or returning to eating gluten, while doing blood tests and an endoscopy”
Celiac disease is diagnosed first by performing a blood test that looks for specific antibodies made by the immune system. Patients are then referred to a gastroenterologist to learn about the next steps.
“An endoscopy often is our gold standard, because that's when providers go in and look at the villi and the small intestine,” Germone said. “They look at it visually with the camera, and they also take a small sample to look at under a microscope to see the villi and assess whether the lining has been flattened, which indicates celiac disease. ”
Are you a parent looking for help in testing to see if your child has celiac disease? Children's Hospital Colorado operates the Colorado Center for Celiac Disease.
However, blood work and endoscopies only work if patients are eating gluten. “If your family decides to not eat gluten anymore and try to get a diagnosis, we don't know if you have it because right when you stop eating gluten, you start to heal, and the immune response goes down and dissipates.” Typically, a gluten-containing diet needs to be resumed for three months once someone goes gluten-frees.
“It only takes a small amount of gluten to trigger the immune response with celiac disease.”
20 parts per million of gluten is the threshold where people with celiac disease start to get sick. To put that in perspective, that’s also around 10 mg daily – which is a small crumb from a piece of bread.
“Be aware with personal products with celiac disease.”
Gluten is found not only in food, but in a variety of personal care products, including medications, lotions, nail polish and more.
The good news for those with celiac disease: The gluten molecule is too big to be absorbed through skin. “It gets into your body through mucosal membranes, such as your eyes, your nose, your mouth.”
One area to be cautious with topical products is with younger children or children requiring more supervision, who are always putting their hands in their mouth. People who chew on their nails or hair should also be careful of beauty products. Be aware that some personal care products are made in factories and production facilities that might have a high cross-contact rate with gluten.
Vitamins, supplements and medications can be a concern, as they are ingested. Complicating the issue: There's no regulations on medications for needing to disclose any sources of gluten, Germone said. Other tips: Remind your pharmacist of your celiac disease and be careful with lip products, she said. “Our dietitian at Children’s Hospital Colorado likes to say, ‘Lip products actually disappear throughout the day because you're slowly ingesting them.’"
“Gluten-free foods for celiac disease cost 140% to 240% more, for smaller portions, compared to a standard diet.”
While the good news is there are more gluten-free products today, the bad news is they tend to be more expensive, offering less food for the money, Germone said. “One of the things you can do is buy naturally gluten-free foods, such as your raw produce and meats.”
Families who were not food-insecure before might become so after a celiac disease diagnosis. “And then there's the burden of, ‘Well, do we all eat gluten-free to support our child or children or family members with celiac disease, or do we make separate things?’”
Even if a packaged product appears naturally gluten-free based on the ingredients, people should contact manufacturers to ask about the source of certain ingredients and if the food is made on equipment shared with things that have gluten, Germone said. “If it is, and it's not cleaned in between, it's no longer safe.”
“Promising therapeutics are on the horizon for celiac disease.”
There are some promising therapeutics being developed, Germone said. “They are currently geared primarily toward adults to target accidental (gluten) exposures or ongoing symptoms or enteropathy despite a gluten-free diet. But, hopefully, these advances continue, and today’s kids will have some new therapeutics in their lifetimes.”
Other good news: “We've gained a little bit more traction with reviewing our labeling laws here in the U.S., with the first labeling requirements from the FDA in 2013. And culturally, we have a better understanding and better support in place for all of those with celiac disease,” she said.
“I really hope that more awareness continues to grow and is supported at a very structural level, both federal and state. It would be huge if you could just easily know if your food had gluten in it or not, and if you had a government subsidy for your food. We need more structural support for people with celiac disease.”
A special thanks to Marisa Stahl, MD, Sadie Nagle, MS, RD, LD, and Edwin Liu, MD, for their contributions to this story.
Key points:
- Celiac disease affects between 1% and 3% of the U.S. population.
- Celiac disease is an autoimmune condition where the immune system and inflammation cause damage and flattening to the small intestine villi causing a malabsorption of nutrients and a variety of other symptoms.
- Celiac disease can develop at any point in life.
- There are over 200 symptoms known to be associated with celiac disease, making diagnosis challenging.
- The only treatment is a gluten-free diet, which can be more expensive for less food and requires diligence and consideration when purchasing food and some vitamins and medicines.
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